Mast Cell Disorders Forum

texan1960 Guiding Light Offline I Love YaBB 2! Posts: 178	Definition? 11/18/14 at 08:44:16 How are aggressive masto or mcas defined?
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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: Definition? Reply #1 - 11/20/14 at 19:38:31 An increasing Tryptase coursing damage
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texan1960

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Re: Definition?
Reply #2 - 11/21/14 at 05:27:09

I have seen tryptase rises but also organ infiltration such as spleen or liver....so a question I have is some people with masto or mcas have excessive mast cells in specific organs... For example GI or Bladder(IC)... Wouldnt this be organ infiltration? I have these and MCAS symptoms but not a high tryptase. So this makes me wonder if the raised mast cells and inflammation are the chicken or the egg... And where do people like me fall along the spectrum. Clearly I have organ damage. But not high tryptase. Shocked

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peter

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Re: Definition?
Reply #3 - 11/21/14 at 11:53:41

The number of mast cells increase any where there is Damage to mend that damage IS the Damage coursed by the mast cells OR something else in some the damage courses the mast cell activation its that activation that fix the damage but with some side affect's that's where the Tryptase comes in to much fixing can courses damage by the mast cell

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Futurehope

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Re: Definition?
Reply #4 - 11/22/14 at 08:58:15

Texan,

I so totally had your exact question on my own mind. My tryptase was in the normal range. My physician categorized me as "non-malignant mast cell disease". This was my official diagnosis even though my duodenum, ileum and colon, showed higher than normal mast cell involvement. (Interesting to me is the fact that my esophagus and stomach always appear somewhat inflamed, yet the number of mast cells there were normal.)

When I asked specifically if I have systemic mastocytosis, especially because of the high numbers in my digestive system, I was told "no". In addition, it is very obvious to me that my "painful bladder syndrome", otherwise known as interstitial cystitis, is obviously a reaction of my mast cells to food or other substances.

Even though my physician does not think I have systemic mastocytosis, she does think that my mast cells "overreact". It is some sort of genetic defect, and it is associated sometimes with another ailment I suffer from called POTS (postural orthostatic tachycardia).

Yesterday, I had bloodwork done. One test called for was "C Kit mutation analysis". I was told this was the gold standard for diagnosing mastocytosis. I'll find out for sure whether or not I have it, since I do have involvement of my GI tract and my bladder.

Peter,

From what you answered, mast cells can be increased in number where inflammation or damage is present. The big question is, are the mast cells triggered as a "normal" response to the damage and the damage is ongoing, therefore, their number is excessive? OR Is there damage and consequent mast cell involvement which because of easily triggered mast cells causes MORE and exacerbated symptoms because the mast cell response is excessive?

In a person like me with ongoing digestive difficulties, I may be in an unending loop of inflammation due to allergic responses (or whatever), which triggers faulty mast cells, which degranulate and keep the inflammation going and causes me other problems, which keeps the inflammation going, which keeps the mast cells triggering, ad infinitum.

As a matter of fact, in my particular case, during one of my bouts with a urinary tract infection, my urologist told me at the time that "interstitial cystitis" patients like me may feel pain in the bladder long after the infection is cleared up. Well, that is exactly what happened to me. I had a urinary tract infection, which probably set up a normal mast cell response, which then continued on and on because the response of the mast cells was excessive and unending. Phew. Come to think of it, I certainly have excessive mast cell involvement after getting a mosquito bite. My large, inflamed, itchy weal can last for five days. My reaction is way more than a normal person's reaction.

Bottom line is, after we have a "normal immune response" to an infection or an insult, our normal response is anything but. Our "normal response" may cause our mast cells to react excessively, which sets up an unending cycle of overreactivity. Embarrassed

Fun. Fun. Fun. Put these mast cells to rest already!

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Spartako

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Re: Definition?
Reply #5 - 11/23/14 at 12:10:43

Quote:

WHO criteria for systemic mastocytosis

Major criterion
Multifocal, dense aggregates of mast cells (15 or more) detected in sections of bone marrow and confirmed by tryptase immunohistochemistry or other special stains

Minor criteria
a. In biopsy section, more than 25% of the masts cells in the infiltrate have atypical morphology, or, of all the mast cells in the aspirate smear, more than 25% are immature or atypical
b. Mast cells co-express CD117 with CD2 and/or CD25
c. Detection of KIT point mutation at codon 816 in bone marrow, blood, or other extracutaneous organs
d. Serum total tryptase persistently >20 ng/ml (not a valid criteria in cases of systemic mastocytosis with associated clonal hematologic non-mast-cell lineage disease)

Diagnosis may be rendered if one major plus one minor or three minor criteria are fulfilled.

If just more mast cells are found you cannot have the diagnosis SM but you get the diagnosis MCAS or MMAS. MMAS if c-kit mutation D816V is found.

Mediators released by mast cells cause inflamation. You need to find to which triggers you react and avoid them.

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peter Mentor Offline I Love YaBB 2! Posts: 294	Re: Definition? Reply #6 - 11/23/14 at 18:15:35 Futurehope YES you are right Then there's the mast cell activation that causes the baseline tryptase to increce so the number of mast cells increse arfter etch activation this activation can be good for the body if the brain can handle it very fine line to walk
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Futurehope

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Re: Definition?
Reply #7 - 11/24/14 at 00:48:19

Spartako, You said "You need to find to which triggers you react and avoid them." I don't know how to quote sentences on this forum?

Unfortunately for me, I react to too many foods. And, yes, if I avoided eating, I would feel great, until I died of malnutrition. And almost any medicine I take to fix my twitchy mast cells, causes a reaction in me. It's amazing I am able to live like this. And the reason I can is that the reactions I have are not life-threatening. They are uncomfortable.

Peter, you quoted the criterion for systemic mastocytosis, and I thank you for that. I display the major criterion in my digestive system (and probably in my bladder, but they did not check for mast cells in there).

As for a minor criterion, one of them you said is: " Detection of KIT point mutation at codon 816 in bone marrow, blood, or other extracutaneous organs." I believe my physician is looking for this mutation in my blood as I write. So, If that turns out positive, I will have one major and one minor criterion. IOW, I'll have systemic masto. You said that the above C-KIT mutation shows "monoclonal mast cell activation". I'm not sure whether MMAS is considered systemic mastocytosis? Is MMAS a subset of systemic mastocytosis?

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texan1960

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Re: Definition?
Reply #8 - 11/24/14 at 08:53:10

Mine pretty much mirrors yours... Plus the wretched muscle joint and bone pain, light headed episodes, flushing, hives sometimes. Weatherrrr is a trigger for me... Cant stop that. Dont drink, take antinflamm, no msg, sulfites. Can only eat fish, spinach, and strawberries here and there... So yes, I do know and avoid some triggers. I have not had any C kit testing, but tryptase is not high. On doxepin and ketotifen. Also Zantac. Lists I have been through zyrtec, claritin, allegra, singulair, hydroxizine... So yeah, running out of options but keep plugging! Oh yeah also tried gastrocrom Angry

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« Last Edit: 11/24/14 at 10:21:15 by texan1960 »

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Spartako

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Re: Definition?
Reply #9 - 11/24/14 at 09:49:49

You got multifocal dense aggregates of mast cells? Or just more mast cells than usual? If they are not aggregated it is not considered SM.

MCAS, MMAS and SM are subtypes of MCAD.
Details here: http://www.jaci-inpractice.org/article/S2213-2198(14)00098-1/fulltext#tbl1

I am also very sensitive to food triggers. Safe foods for me are only: turkey, butter, potatoes, white rice, oat, iceberg salad, celery, salt (without additives), brown sugar and whey isolate.
It takes time to heal when you start strict diet.

http://www.histaminintoleranz.ch/download/foodlist/21_FoodList_EN_alphabetic_wit...
http://salicylatesensitivity.com/about/food-guide/
http://www.hc-sc.gc.ca/fn-an/pubs/securit/2012-allergen_sulphites-sulfites/index...
http://www.failsafediet.com/

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Futurehope

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Re: Definition?
Reply #10 - 11/24/14 at 13:57:21

Spartako, I do not think I have multifocal dense aggregates. At least that is not how the biopsy read. All that was mentioned in the GI biopsies were a certain number of tryptase positive cells per high powered field, if I remember correctly?

As for a strict diet, I was given handouts on "burning mouth syndrome" and the foods that could trigger it, and a handout on lowering the histamines in my diet, written by a person named Joneja who is a well-known diet -histamine researcher. I found it amusing, and non-realistic when the handout suggested only eating freshly killed meat, fish or fowl?! I mean, I do not live on a farm. The next best thing for me to do is to eat frozen flounder, or chicken that was just cooked. I am not to eat leftovers, because the histamine content rises even in a refrigerator.

Nothing is really 100% non-reactive for me, but I've narrowed my daily intake to:
Breakfast
gluten-free oats (Bob's red mill), Amy's gluten free pancake mix, eggs with the yolks (Whites only burn my bladder: too much histamine),
Lunch
Tinkyada gluten-free rice elbow macaroni with farmer cheese on top, and any leftover veggies that are not considered high in histamines (leftovers are really a no-no, but I'm not perfect)
Dinner
a rotation of flounder, ground turkey or roast chicken for dinner with veggies not high in histamines.
Snacks
My snacks are organic 2 % milk with gluten-free dry cereals without chemicals, and an occasional gluten-free muffin from Udi's.

That's it. I carefully monitor my caloric intake to arrive at the 1600 calories I need daily to maintain my weight. So far, so good with the weight. I do not eat out or at other places besides home. I will be testing my ability to conform to my specific diet when I go traveling this Christmas. It won't be easy.

I am still reacting to the foods mentioned above, but I have to eat to live, so I pick foods that I can tolerate.

I've been off red meat, and pork and other animals like that for over a year. I do eat chicken, fish and turkey. I have been gluten free for two months.

This ailment is a challenge for sure.

@Texan I just tried 10mg Doxepin at night for the last three nights. I cannot continue it anymore. The side effects made it intolerable. Felt really badly. Made my orthostatic intolerance worse. Made it difficult to get up in the morning, and did not help my restless leg syndrome at all.
Oh well. Cromolyn Sodium (Gastrocom) caused very bad heartburn.

I'm really not that good with any meds. Are you able to tolerate pain-killers like NSAIDS for your aches and pains? I don't like taking anything if I can help it. I hope you are feeling okay?

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Re: Definition?
Reply #11 - 11/24/14 at 21:15:28

Having more mast cells per high power fields does not qualify for SM. It is sometimes called mastocytic enterocolitis if it is in the gut. But MCAS covers this findings also.

Histamine is only one substance which can trigger mast cells. Others are salicylates, sulfites, gluten, caseine, oxalates, amines, opioid-like peptides, nitrates, glutamates,...
It varies from person to person, you have to find out for yourself.
http://www.failsafediet.com/the-rpah-elimination-diet-failsafe/quick-reference-w...

I also react clearly to egg white but I do not know if it is from sulfites or an other substance.

The dose of Cromolyn Sodium (Gastrocom) has to be slowly increased because of reactions. Some people with salicylate intolerance (aspirin,..) react to it because it is similiar to salicylates.

In your situation I would try the failsafe diet.
http://fedup.com.au/factsheets/support-factsheets/how-to-start-failsafe-eating-2...
There is a lot to read!

Peas are often considered failsafe, but I do react to them, maybe because of sulfites.

I would start a diet with only rice, clarified butter, turkey, iceberg lettuce, salt (without added stuff) and water for 4-7 days. Then I would add one new food for 4 days and if there is no reaction, add another for 4 days and so on.
I would test stuff from this list first:
Bamboo shoots, celery, green split peas, potato, apple – golden delicious, cashews (not roasted), safflower oil, sunflower oil, oats.

It should also be no problem for your vitamines and minerals storage to only eat rice, clarified butter, turkey, iceberg lettuce, salt for some weeks. But if your storage is depleted it may be a good idea to add tolerable supplements.

I cannot eat bananas (amines), pears (amines), cabbage (sulfite), brussels sprouts (sulfite), cauliflower (sulfite), legumes (sulfite), most fish (histamine or added sulfites).
If I could add that stuff I would suffer psychically a lot less. The craving for intolerable food is sometimes so strong...

Omega3-fat supplements are a very good idea. Multivitamine supplements have often salicylates, sulfites or other stuff I react to.
Another aspect is that a damaged gut cannot absorb vitamines and minerals, so it may be better to eat tolerable stuff with less vitamines as intolerable with more.

If there is really nothing you do not react to even a little, it can be that the mast cells are triggered mechanically by moving food...

The stuff you eat has some more or less things which may not be tolerable:
pancake mix, farmer cheese, veggies with salicylates or other triggers, brown rice (salicylates), flounder (sulfites maybe), snacks (milk, cereals?, muffin (backing powder). Which fats du you use?

The problem is not that you have to eat to live. You can get the calories, vitamines and that stuff from (more) tolerable food. The problem is the craving for "good" tasty food. Eating strict needs a very strong willpower. Eating tasty stuff releases lots of neurotransmitters which make you happy. It takes very long to "reprogram" your brain to think that tolerable food tastes good. And in some years you may think off oats, turkey and rice when you get hungry...
A real challenge is going shopping, seeing other people eat, smelling...

Paracetamol (acetaminophen) is most tolerable with NSAID-Intolerance.
But taking painkillers over longer time can cause chronic pain but not taking it also... It is really crappity smacked up.

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Futurehope

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Re: Definition?
Reply #12 - 11/25/14 at 03:31:42

Spartako,

Thank you for so generously sharing your suggestions. For me, it probably would have been better if I had begun with a little extra weight on me. I fear if I tried what you suggested, I would disappear because of weight loss. I do need 1600-1700 calories/day to maintain. I have never yet found supplements that don't bother me, including powdered protein drinks.
You asked about fats, I do not ingest fats much, except for the little I get after spraying PAM on my fry pans. I get enough fats from the cheese and chicken (thighs are used and they have more fat). I get instant heartburn from fatty foods, especially meats (which I no longer eat), and butter (I cannot tolerate even a smidgeon). As for supplements of fatty acids, do you have any ideas? I found them difficult to take as well.

@Texas,

If you don't mind my asking, why do you have joint and bone pain? Is that part of mastocytosis? I was having some bone pain last night and I am curious. Of course, I just took a bad fall a week and a half ago, and maybe I have a hairline fracture someplace which was causing my pain.

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texan1960

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Re: Definition?
Reply #13 - 11/25/14 at 05:31:58

Yes, it is part of the MCAS (I don't have Masto, but actually MCAS and IC). I have pain everyday at some level. On a good day if you grab my arm the "wrong way" it will hurt (like an aching). On a bad day, it feels like I am coming down with the flu x 3, that all over-aching. Hurts really bad all over, not just one place. Ketotifen and doxepin are helping, but not a miracle fix by any stretch. If I get too tired, it also flares up. There are several other folks on here with this kind of pain from both Masto and MCAS. One hypothesis is it is the mast cells releasing their nasty stuff near nerve endings which then fire off...hence the horrid aching/pain. I don't know. Others may have a more detailed, scientific, explanation. I have had this for nearly 15 years, so tried lots of different things along the way to help it. If your pain is only in one place, may be a fracture. I will tell you, mine started out in my forearms, then over time spread from there.

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Futurehope

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Re: Definition?
Reply #14 - 11/25/14 at 10:17:27

Spartako,

The suggestion you gave of where to start said, rice, clarified butter, iceburg lettuce, salt (without added stuff) and water. Not that I would do this, because I cannot tolerate butter, but......what did you put the butter on? I mean, did you put it on the rice? All you ate was rice for 4 days? Was it white rice, not brown, because of salicylates? How can the gut have any motility at all with this rice diet? And calories? How do you ingest enough with this diet. I think I would feel so weak from doing this? There is no protein in the above either.

Did a doctor give you an okay to try the rice, water, clarified butter, salt and water diet? Phew, that's rough. It's like what you eat after you've had the stomach flu.

You also mentioned then adding (one at a time):
"Bamboo shoots, celery, green split peas, potato, apple – golden delicious, cashews (not roasted), safflower oil, sunflower oil, oats."
The only thing I can eat on your list is oats, gluten-free for safety. Bamboo shoots are usually canned and I do not do well with anything from cans, for some reason.

Actually, after reading a list of high-salicylate containing foods, I basically avoid all of them, so maybe I'm sensitive to salicylates? I wonder if I could eventually tolerate some stuff that I cannot tolerate now?

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